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Katie was a happy and gregarious child who grew up in a small farm town with plenty of fresh air and sunshine. She was diagnosed with Type 1 diabetes at age 11 but didn’t let her daily diabetes management get in the way of having fun. She cherished time with friends, was a star athlete, and had a true love of family and community. Although Katie didn’t know anyone else who had Type 1 diabetes, she rarely let it get her down, and she always did what her doctor and parents asked her to do to keep her blood sugars in check. Katie was named high school homecoming queen, and she never shied away from attending birthday parties, sporting events, or class trips because of her diabetes. But this scenario drastically changed when Katie ventured off to college.

College life was unlike anything Katie had ever experienced. There was no curfew or constant inquiries about her diabetes management. Nobody commented on what she ate or how many carbs were in the late-night pizza or tacos. She was enjoying off-campus parties, where alcohol flowed freely and pressure mounted to wear tight-fitting clothes. On her 21st birthday, Katie selected a clingy shirt with skinny jeans. Her insulin pump bulged under her shirt, which was quite unsettling. Katie decided to take off her pump, and was pleased with her birthday attire.

The following morning, Katie weighed herself at the school gym. Much to her delight, the scale was down several pounds. Although her blood sugar levels were high (due to lack of insulin), she believed she had discovered the “secret” to weight loss. By withholding her insulin, she could lose weight. Katie wondered if she was the only one who had discovered this method of weight loss. Over time, diabetes management and target blood sugar levels seemed unimportant, and quick weight loss became quite appealing.

As Katie became obsessed with losing weight, she was no longer concerned with potential complications associated with high blood sugars (such as eye, kidney, or heart disease). Intellectually, she knew that insulin was her lifeline, but she didn’t care. Along with 30% to 40% of women with Type 1 diabetes, Katie was restricting her insulin to lose weight. She was beginning to develop a potentially life-threatening eating disorder known as diabulimia (ED-T1D), a dual diagnosis of Type 1 diabetes and an eating disorder.

The seriousness of diabulimia

Having an eating disorder along with Type 1 diabetes is quite serious. The issue stems from the fact that our bodies require insulin to get blood glucose from the blood into our cells so we can use it properly as fuel. In Type 1 diabetes, the body MUST receive insulin either via an insulin pump or multiple daily injections to properly utilize glucose. When insulin is withheld, as in Katie’s case, glucose builds up in the bloodstream, and the kidneys do all they can to help excrete glucose through the urine. Rapid weight loss occurs as the body rids itself of glucose, calories, and fluids, and the pounds drop off. If insulin is restricted and glucose isn’t being properly used for fuel, the body turns to fat and muscle for energy. This may lead to dangerous ketone production, which causes vomiting and worsens dehydration. Eventually, diabetic ketoacidosis (DKA) may occur, resulting in cerebral edema (brain swelling), coma, and even death.

According to research published in the British Medical Journal, women with Type 1 diabetes are 2.4 times more likely to develop an eating disorder than their peers without diabetes. Individuals who skip or restrict insulin to lose weight have higher blood glucose levels and are at greater risk for long-term microvascular and macrovascular complications such as heart disease, stroke, neuropathy, retinopathy, and nephropathy. Mortality risk is also increased compared to those who do not restrict insulin.

Help is available

“Eating disorders and diabetes are each isolating enough on their own. Combined they can be devastating,” says Erin M. Akers, Executive Director of Diabulimia Helpline (DBH), which she started in 2010. DBH is the country’s first nonprofit organization dedicated to education, support, and advocacy for people with diabetes and an eating disorder. DBH offers resources including a 24-hour hotline, three online support groups, a Diabuddy mentoring program, treatment referrals, and a Family & Friends program. “No one should ever have to travel this road alone.”

Akers, a recovered diabulimic, “was troubled at the lack of awareness and training about eating disorders in the diabetes community.” In 2013, Diabulimia Helpline launched the Healthcare Professionals Education Program, a lunch-and-learn in conjunction with one of the treatment centers the organization works with. “The numbers don’t lie. Diabetics are ending up with eating disorders at a higher rate. We need to give diabetes professionals the training to handle this epidemic,” she says.

Katie was constantly nauseated and fatigued. She experienced extreme hair loss, skin dryness, and dark eye circles and became increasingly depressed. She was physically reminded that her eating disorder was complicating her diabetes and making her miserable. She was spending her days thinking about how to restrict food, exercise, and withhold insulin while doing her best to stay out of the hospital. The turning point came when her college roommate found her passed out on the floor and called 911. Katie woke up in the ICU with diagnosed DKA. She was exhausted from the daily struggle of this devastating dual diagnosis.

One day while driving home, Katie pulled into a dark parking lot and started to sob. In desperation, she Googled help for diabulimia and found an organization dedicated to raising awareness of eating disorders in Type 1 diabetes and helping people access appropriate treatment.

“When you have an eating disorder, you go to drastic, dangerous lengths in an attempt to be in control of a part of your life. Nothing else matters more than your eating disorder; it’s calling the shots,” says Asha Brown, Executive Director of We Are Diabetes (WAD). “Lecturing and shaming a [person with Type 1 diabetes] about the risks of their behaviors when they’re struggling with an eating disorder is only going to make them feel more shame and guilt.” A different approach must be taken, explains Brown, who founded WAD after her own recovery and hopes that its work will help support people in their own recovery and raise awareness of this important issue in diabetes care. “There is still a concerning lack of communication between the diabetes health-care world and the eating disorder treatment world. Providers from both sides need to be ready and willing to communicate outside of their own clinic system if their patient is receiving care from multiple providers. Currently there are a handful of eating disorder treatment centers in the U.S. that offer specialized Type 1 diabetes treatment tracks. WAD often helps CDEs and endocrinologists connect with these facilities.”

Treating diabulimia

Although the majority of people suffering from eating disorders are female, they occur in males as well. However, little research has focused on men with diabetes and eating disorders. We must remember that a person with diabulimia may be experiencing feelings of shame, guilt, and sadness and may have trouble opening up to health-care providers about having an eating disorder. The treatment team must be non-judgmental and supportive and receptive to open and honest dialogue. It takes a village — an endocrinologist (or other qualified health-care provider), a registered dietitian-nutritionist (with knowledge and training in treating eating disorders and diabetes), a certified diabetes educator, and a mental health professional. The treatment plan requires a trusting relationship between the patient and his or her health-care team. Both conditions must be treated simultaneously for both to improve.

Ann Goebel-Fabbri, PhD, is a psychologist who worked at Joslin Diabetes Center and assistant professor of psychiatry at Harvard Medical School. She currently runs her own private psychology practice. Her research and treatment focuses on eating disorders in people with Type 1 diabetes. She recently published a book based on interviews with women who recovered from diabulimia. “My goal was to learn from these women — the true recovery experts — about how their eating disorder emerged, what it did to their lives and overall health, and what they found essential to their recovery. Treatment professionals sometimes feel scared by the severity and complexity of this dual diagnosis and may question if people can ever get better. These women’s stories prove that there is realistic hope for recovery and that recovery directly translates into major improvements in quality of life. The work it takes in treatment is clearly worthwhile.”

Health-care providers should not assume that a person suffering from diabulimia is taking his or her insulin as recommended. If someone is withholding his or her daily insulin dosage, he or she may feel tired, thirsty, and confused. Provider discussions should include open-ended questions such as, “Can you tell me how you feel about your diabetes diagnosis?” and “What do you eat on a typical weekday?” Improved diabetes care must focus on small yet significant steps, such as checking blood glucose levels. Instead of finger wagging when a person doesn’t check morning blood sugars, discuss the possibility of checking levels the following morning. If the person suffering from diabulimia has a long history of disordered eating, it’s helpful to discuss the basics of carbohydrate counting or preparing a food-shopping list. Consider reassessing calculations of units of insulin per gram of carbohydrate intake, and make sure blood sugars come down slowly. Assessment of the patient’s basic nutrition knowledge is important to help set the stage for recovery from this debilitating eating disorder.

A nutritional care plan for diabulimia should be flexible and must effectively address the needs for Type 1 diabetes as well as an eating disorder. Goals should be to restore normal weight, take insulin as needed to manage blood glucose levels, and decrease negative behaviors such as binge eating, purging, laxative use, and restricting foods. Once a person with diabulimia is in recovery, he or she can begin to enjoy a fulfilling and productive life.

Katie is now happily married and the mother of a 1-year-old beautiful baby girl. Although she continues to work to sustain her recovery, she is focused on staying healthy both physically and emotionally. She is grateful for her loving family and wants to help others struggling with this difficult eating disorder.

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